Probing the benefits
Many people would describe Coffin's as a "good death." Research has shown that most Americans have strong feelings about how they want to die, but some patients are afraid to share them with doctors for fear of losing their confidence. When patients have suffered or had their wishes ignored, Block notes, the grieving process is harder for those left behind.
Susan Block, MD (center), promotes end-of-life understanding with Nina Gadmer (left) and Lauren Dias, MD.
"Death is a very scary subject," she says. "In societies where people live with parents and grandparents and often die at home, it is more acceptable. In this country, it's sequestered in many ways, and people don't want to think about it."
Block has encouraged such thinking for the past decade as director of the Project on Death in America's Faculty Scholars Program, a national effort to support research in the United States and Canada around care for terminally ill patients. Dana-Farber's Abrahm and Wolfe have received funding through the program. With her colleagues in palliative care, Block has been conducting several studies to better understand physicians' experiences.
One, funded by the Nathan Cummings Foundation, has entailed interviews with roughly 200 doctors involved with some of the same patient deaths. The joint project with the University of Pittsburgh has revealed, among other findings, that caring for dying patients is particularly distressing for interns (first-year trainees), who "are left with questions about whether they did the right thing, and no chance to process their sorrow and feelings of incompetence," says Block.
The research underscores the need for more palliative-care education for clinicians, team administrator Nina Gadmer observes. "They were incredible interviews," she says. "We hope this research will eventually lead to better models of care and improve the experience for patients, families, and physicians alike."
"We hope this research will eventually lead to better models of care and improve the experience for patients, families, and physicians."
— Nina Gadmer
Another major study, this one funded by the Robert Wood Johnson Foundation, has examined the formal and informal education around end-of-life care in U.S. medical schools. Interviews with more than 2,000 medical students, residents, and faculty members suggest that "students and residents feel unprepared to provide — and faculty and residents feel unprepared to teach — many key components of good care for the dying," including how to address patients' fears or help bereaved families, says project director Amy Sullivan, EdD.
On the pediatric side, investigations by Wolfe, Jane Weeks, MD, MSc, and others have led to changes in palliative-care efforts for children, both within and outside Dana-Farber. These include a 2000 study revealing that physicians generally recognize that a child has no realistic chance of cure well before the patient's parents do, resulting in the delay of difficult conversations and planning.
Following up that work, Wolfe has begun a pilot project among children with advanced cancer to evaluate their quality of life, along with their parents' and physicians' perceptions of how the children are faring. The team will do so using a hand-held, computer-based system called PediQUEST.
"We want to gauge the impact of this system on the natural history of symptoms, suffering, satisfaction, and the timing and quality of end-of-life discussions," Wolfe explains. "The next step will be to take that data and conduct a full-scale controlled clinical trial."
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